Diagnosed only a month ago, I have been struggling with grief since diagnosis. This has had a huge toll on me, really badly affected my life and health. No idea where to start...
I'm only 24 and I feel so defeated because of how the doctor's treated me, referred to gyne after my MUM demanded over the phone to doctor, begged for laparoscopy and got surgery/diagnosed one year later. Still my doctor thinks it's not that bad and what's in the news is just an "extreme example" uhhh most endo cases seem pretty EXTREME hello!!???
I feel so so defeated, I feel like someone has died and I don't know how to accept the illness. Im in a grief/relief trap right now....Any advice? ❤️
I was diagnosed with stage 4 endo when a was a just a little older than you. I had an op to remove 2 10cm complex cysts on my ovary and then had hormone treatment for 6 months. Despite the diagnosis of severe endo it has had little impact on my life and it is only recent pain, 18 years later, that has brought me here. In that time I have had minimal pain and another child. Before my endo diagnosis my gynecologist suspected ovarian cancer and my op was done in a spcialist oncology department...i was terrified. Since finding out I had endo and not cancer, every day has been a blessing.
While getting a diagnosis can feel traumatic it means that treatment will be now available to you. Remember, those that post on forums are usually those of us currently experiencing problems ourselves... I wasn't drawn to this forum in the 18 years I felt okay. Endo is individual for everyone and it is normal to feel grief for the 'healthy you' that each of us strives for. I just wanted to convey that an endo dyagnosis doesn't have to mean that your life is going to change for the worse, it just means that you can explain a few things instead of worrying about them and get better treatment for them. ❤️
My 22 year old daughter has just been diagnosed with endo. I have done research and found that serrapeptase helps, it is an enzyme that gets rid of dead tissue. I have just given her some to try. If you google serrapeptase endometriosis there are articles. I looked on reviews on the big buying site and people were saying that after 1 to 2 months there was great improvement. You need enteric coated but not sure on what dose yet. A good website for information is endo-resolved.com I am not linked to the website and it doesn't sell stuff. I hope this will help you and that you know it is possible to have a great life ahead of you. x
If by 'Dr' you mean your GP, then GPs are supposed to follow a precise protocol - which has been laid down by the Medical bodies that govern them!
This protocol tells them exactly how to act, depending on what the exact diagnosis was, concerning your endometriosis, after you had your lap.
If the laparoscopy found that you had particularly worrisome types of endo, or if they found endo in places where it can be dangerous - eg on the bowel - then once s/he got the results, your GP is bound by the Guidelines / protocol to refer you to a BSGE Centre, where you would be treated by experts. If the endo was mild, and not dangerous, then there are still other things that your GP can do, such as a Mirena coil. I had one of these for over 6 years, and it saved my life. Talk to the People on here at 'Endo UK' HQ, and also see if there is a local 'Endo Support Group' in your area. There is one near me in Devon and they are great. Hope this helps, but do seek out answers and get militant: DLTBGYD!!
In terms of protocol, my GP told me that 'for endometriosis, NOTHING CAN BE DONE', the same from the middle aged highly knowledgeable nurse practitioner who repeated these exact words and added 'for interstitial cystitis, NOTHING CAN BE DONE, for the perimenopause, VERY LITTLE CAN BE DONE as there is a history of breast cancer in my family'. This is the support I got since February and I was ill and in pain in front of him and suffering from high anxiety. He prescribed citapram that made me ill, a zombie on a settee, unable to move. They really take women for stupid! They do cause a lot of hurt and distress, totally unnecessary to someone already often unwell. I consequently requested a cytoscopy following 3 cistitis between 28 Feb and 9 May and years of repeated cystitis. Initially, they refused, so I argued. It was done at a One Stop Urology clinic, the team there was very professional, very good. I had no pain after both procedures. So, yes it's important for us to be informed about these procedures that GPs have, apparently, to follow. Thank you. 😊
Sorry to hear about your experience and I can completely relate. I’m 24 too and I have been struggling with periods since 14. The pain has gotten worse and worse to the point where for the past few years I have been hospitalised a few times, bleeding and severe pain for 3 weeks out of the month, sickness, shooting pains down my legs, diarrhoea, vaginal pain, the list goes on. I have been begging for a referral for years and only got it a few months ago also after my mum demanded it (she’s a nurse!). I am still not being treated properly, the consultant is refusing to investigate and keeps telling me to change contraceptive even though I have tried them all. She has given me the zoladex injection and I have had 4 of them now and have now been bleeding every single day for 3 months and the consultant still won’t investigate. I am mentally exhausted and I feel depressed and anxious every single day, all I talk about is this bloody illness! I know how you feel and I hope it gets better for you now you have a diagnosis ❤️ it’s exhausting and you feel like it’s you against the world every single damn day even though it’s YOUR body! Sending you love
I am 29 and was diagnosed 2 weeks ago after they did my laparoscopy. I was very low and upset the first week, trying to get my head around it. I think it’s because there are no definite pathways or answers in terms of how endometriosis will affect your life. It it has been removed, it might never come back again and you could have no pain and easily get pregnant etc. OR it might come back regularly, it might get worse, it might make every day life extremely difficult due to the pain and may mean that you become infertile. OR it might be anywhere in between both of those. And there doesn’t seem to be a way of knowing what will happen. We just have to live in the present moment, try our best, look after ourselves and take each day as it comes. I have (finally) learned that there is little point worrying about things when we don’t know what the outcome will be. I hope you feel better soon. We are always here to talk to. X
Hi Rachel. It is completely normal to feel that way, it is not an easy diagnosis. For me was also really hard, but with the years and all the burden that had meant to me I have recognised that this a challenge that life put in front of me, that gave me the opportunity to learn more about my body, to get to know myself better, organise my life according to my needs and now kind of give back. It is a wonder that we are able to share love and tips with all of us who were diagnosed, and as some already mentioned it, although hard, it is better to know the reason for the pain or the consequences, to be able to act accordingly. Keep strong but don't hide your feelings. Love 🙋🏻♀️
There is no wonder you feel the way you do. This condition isn’t just physical symptoms it is the mental health, the hormonal and the emotional all wrapped up. It has huge affects.
You need to listen to your body as we are all different and suffer (or don’t suffer for some) in different ways.
There are many ways to minimise the impact. Anti inflammatory diet, exercise (when and whatever you can ) medication, hormones.
It may be worthwhile trying counselling to help you deal with it.
Endometriosis.uk is a good website for info and has local support groups. They have online ones you can join if you are further a field
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New to this,and very confused
New to site - norothisterone/ newly diagnosed
Adhesions spoiling my life
